As a nurse researcher and director of the lactation program at the Children's Hospital of Philadelphia, I have the opportunity to provide personalized prenatal nutrition and lactation consultation to families who are cared for in our Center for Fetal Diagnosis and Treatment. Since the center opened in 1995, care has been provided to over 19,000 expectant families from all 50 states and over 50 countries. Some families that use our services have infants whose diagnosis is fatal or infant survival is not expected. In such cases, it is important to consider maternal wishes about breastfeeding. As part of our routine care, families have the opportunity to discuss and plan for their lactation and breastfeeding wishes prior to birth. It is important that families are given the opportunity to learn about and understand the implications of maternal lactation, even if infant survival is not predicted (Froh & Spatz, 2014).
In pregnancy, milk is secreted from 16 week's gestation; therefore, after birth the mother's body is biologically programmed to make milk even if the infant does not survive. For a healthy term infant, the infant should be placed to breast immediately and for mothers experiencing maternal infant separation, it is essential for mothers to pump early and pump often. In predicted palliative care cases, it is essential to speak to the mother about her wishes to hold her infant skin to skin immediately postbirth and if feasible to allow the infant to lick, suckle, and taste milk at the breast. At birth, nurses must be aware of the mother's wishes and provide her support and time to have these experiences.
As establishment of copious milk supply is influenced by time to first pump after birth and frequency of milk expression in the first few days, mothers should be encouraged to pump with a hospital grade electric breast pump as they wish. At our center, the possibility of milk donation to a milk bank which is part of Human Milk Banking Association of North America (HMBANA) is discussed both during prenatal nutrition/lactation and palliative care consultation. Some mothers may be interested in expressing milk long term for donation to a HMBANA milk bank. Mothers report that milk donation after perinatal loss is a positive experience that helps with the grieving process and gives meaning to their child's life. Milk banks that are part of HMBANA are familiar with working with bereaved families and in many cases waive the minimum amount of milk for donation.
Bereaved mothers most go through the same vigorous screening process and be willing to have laboratory testing of their blood in the same fashion as any other donor to a HMBANA milk bank. At our center, this discussion occurs during the prenatal process so that the mother is prepared for the steps she will need to go through to become a milk bank donor. At time of infant demise, the milk bank coordinator works quickly to assist the mother through the screening and donation paperwork while being sensitive to her bereavement needs. The mother should understand that she should only continue to express milk for the milk bank, if it is fitting into her lifestyle and positively affecting her psychological well-being. We have found that mothers may choose to express milk for the milk bank for weeks to months. The milk bank coordinator checks in with the bereaved mother regularly to assess how she is feeling and if everything is going smoothly with milk expression postdischarge.
Palliative care cases and perinatal loss are difficult experiences for families and healthcare professionals. Provision of human milk and breastfeeding is an integral component of motherhood for many women. As nurses we have the obligation to help families make informed decisions about all aspects of their child's care and having an understanding of breastfeeding in the context of palliative care is essential.
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